Spoiler Alert: Transfer Time

So, BA cancelled lunch on me today.  Which I kinda expected. But, since it was work related, I guess I’ll forgive him.  Actually, he rescheduled for Monday, so, that’s that.  Oh, and at the end of the conversation he told me that he’s been saving a story for our face time.  (He communicates better face to face, so he saves up stuff to tell me!)  Anyway, now I have all weekend to wait to find out what the story is!! Agh!  Seriously, you all know that will drive me nuts!

Lee did not have the right heart cath done today.  His INR  was too high… means his blood is too thin and may not clot.  They couldn’t risk putting the cath in and having a bleeding event.  They thought about putting some fresh frozen plasma in his body to thicken up his blood; however, that would skew the results of the test, so yeah – it was veto’d.  They did a different test using his picc line.  I’ll come back to that.

He’s also developed a bump/growth type thing on his left side and it is very tender and causing pain.  He had another CT scan today to see if they could find something that was missed in yesterday’s CT scan to tell them what it is.  Nope.  Nothing showing up.  No one knows exactly what it is or how to fix it.

His potassium and sodium levels did drop, so he was able to skip dialysis today.  His nephrologist wanted to give Lee a break while he could.  His BNP (the test that tells you if you are in heart failure or not) dropped significantly   From 4000 yesterday to 2900 today.  Or maybe it was 2400.  Anyway, it went down.  Keep in mind, in a normal person, BNP measures 100.  You read that right, I didn’t miss a zero.  Normal is 100.  Lee is 2900.  Or 2400. Take your pick.

Back to the right heart cath that didn’t happen.  I don’t know what the results were.  All I know is that this afternoon mom texted me that Lee is being moved to UNTSW.  UNT Southwestern Medical Center.  Per their website “UT Southwestern is widely recognized as one of the nation’s leading heart disease treatment and research centers, dedicated to providing the very best care and committed to the discovery of new knowledge that will help tomorrow’s patients.”  Personally, I don’t care about tomorrow’s patients.  I just care about today’s patient.  He should be transported this evening. They are taking him via Care Flight, the air ambulance, cause they can’t risk the ambulance getting stuck in traffic.  The good news is that UNTSW really IS a leading heart facility and they have more experts to help Lee.  The bad news is that it is in Dallas.  I live in FW.  For those not familiar with the D/FW Metroplex, and especially those that live on the East Coast, that’s an hour drive in no traffic.  An hour and a half in rush hour, easily.  Everything is bigger in Texas, to get from one side of the Metroplex to the other is like driving the entire state of Rhode Island from north to south.

Okay, I made that up.  But, I bet if you map it, you’d find that I’m pretty darn close!

On a totally different note, I did get the house cleaned today.  Well, the parts of the house that I use anyway… I didn’t do T’s bathroom, which since it is the guest bathroom, I probably should have, but I cleaned the toilet earlier in the week, and he can pick up his own dirty clothes and wipe down the counter and sinks.  Plus, I don’t have any company coming over… so no one will notice! But, I did get the dusting, sweeping, vacuuming and mopping done.  That makes me feel happy.  Yes, I’m weird.

Lastly, I refuse to blog this weekend.  But, since I’m addicted to you guys, I will check in and read what you blog!  Oh, and thank you guys so much for the outpouring of support and love and prayers!  I may not always respond – but I am hearing you!!

And, because I like to include pictures, here are some of Lee.

Lee at Christmas this year.

Lee and our sister Amy at Mr. T’s BD party last year.

Lee in 2011 at our family vacation to Walt Disney World, before he had been diagnosed.

 

Let’s Celebrate, I Survived the Week!

I’ve tried to write this blog three times so far.  I’ve had to delete it due to length, due to lack of time and due to the situation changing.  I have yet to be able to keep this even under 1500 words, so, let’s try a different approach! Something that won’t bore you!

Last week I had a molar extracted.  A bone chip apparently can be a side effect, and it was tearing up my cheek.  Monday the dentist told me to grab some tweezers and I could pull it myself.  Uh huh, sure.   

 

It’s Monday.  I don’t plan to leave the house, so my clothes don’t match.  This isn’t that pertinent, it’s just an aside to let you know that I go out in public looking awful.

My dad is out of town this week.  This week my parents are having their retaining wall fixed/replaced and this means there isn’t a fence around their backyard.  And they have 3 dogs.  And those dogs have to be taken out. 

Lee’s foot hurts.  He can’t walk on it, I go over to take care of him and let the dogs out.  As soon as I got there the plans change and we are headed to Care Now (doc in the box clinic).   

Several hours later, we had the worst doctor I’ve ever encountered. I mentioned the fear of gout and I asked the doctor to make sure she double checked anything that she would prescribe to make sure it didn’t conflict with any of Lee’s existing meds.  She told me “I know how to do my job”.  Then she diagnosed him with tendinitis and tried to give him an injection that conflicted with his meds.  When we brought this up and refused the injection, she then said that she just wasn’t going to prescribe anything at all.  Nice hissy fit doc. 

Monday night I called the dentist and left a message.  I didn’t have any luck in pulling out the bone chip, please call me in the morning and let me know when you can fit me in. 

Tuesday morning they called and had a 3 o’clock opening. Great! I’ll take it!  Then my mom called.  Lee is doing worse; did the doctor say why she wouldn’t prescribe the steroids? Is there something else we can do?  Well, Mom, I can call Care Now and ask for a different doctor to review the file – which I did.  We got called in to have some blood work done.  The new doc wanted to check for infection and for gout. (I sent out a mental “told you so” to the crappy doc from the day before, petty of me, I know!)  After the blood was drawn I left Lee at Care Now and drove the 3 minutes to my dentist and had the bone chip pulled.  They told me that it was wedged and I wouldn’t have been able to remove it myself.  I sent out another mental “told you so” and went back to the clinic. 

In the 15 minutes I was gone, the doctor had made it back.  I walked in the room and Lee goes “Okay, we have to go to the hospital.” “Why, what did she say?” “I have an infection and some other stuff.”  Uh, okay, other stuff isn’t a lot to go on.  So, I got the doctor to come back and tell me the results.  Pretty big infection and his blood sugar was through the roof, she didn’t feel right treating him due to the heart issues.  We’d have the results of the gout test tomorrow. 

Now we head downtown to the hospital.  I pulled mom out of her meeting and she in turn ended up tracking down a doc who could see Lee.  I met up with mom and gave her Lee and then came back home.  I heard later that the new doctor confirmed it looked like gout, so he was going to go ahead and give him some steroids and good pain pills.  I ended up picking up Mr. T at 6:30 and then making several stops to gather up the scripts and everything else that was needed. 

Wednesday I ended up working from their house again taking care of Lee and the dogs.  24 hours comes around and I call to get the results of the gout test.  After several transfers and many more minutes I was then told that the results take up to 72 hours.  Uh no, that doesn’t work for me.  You told me 24 hours, so since it’s not my fault that you gave me misinformation, would you please call the lab?  Several more transfers and then I got the clinical manager and he agreed to call the lab.  About 20 minutes later I had the results.  Lee had gout.  I mean he really has gout.  Your uric acid levels should be at 7.  Lee was at 14.5.  Due to his reduced kidney function his body isn’t flushing the acid out like happens in most people.  And the fact that his is on diuretics makes it even harder.

Fortunately, his cardiologist said “Okay, I can work with that”, so we have hope.  And last I saw Lee, the swelling was going down and the pain was receding.  He could actually put some weight on part of his foot again. 

Now we are at today.  TGIF indeed! After I pick Mr. T up at 6:30, I’ll run him a couple of towns over to spend a few days with some family friends.  He gets to do this every spring break and we all look forward to it!

Tomorrow I spend four hours working with my mom at her antique mall booth.  After that… can you smell it…? I smell the sweet scent of Freedom! 

And look, under 1000 words!  Happy Weekend everyone!